Tuesday, July 15, 2008

Another Good Day.

Madison & Malory

Another good day so far! Madison slept great! No interruptions big enough to wake her up. Jed and I did ok too! It was a little tight....good thing we love each other! This would be the worst kind of therapy for a marriage on the rocks!!

Talked to Dr. Levitt. He said that we will do the xray tomorrow and if all looks good he will possibly allow her to drink something tomorrow night. Then start with food on Thursday. We have been trying to get some info as to how long after eatingbefore she will be sent home. We were old today that since she was admitted for constipation they will probably make her stay a few days after eating to make sure that we are not still having issues. UUUGGGHH... only time will tell. We definitely do not want to go before she is ready and have to come back. We will just have to take it a day at a time and see.

Trying to stay a little lower key today then yesterday. She got really nasty last night (attitude)and I think that it was because we just did to much. We will try to space out breaks and activity a little better today and see how that goes. She has been a little aggravated the last little bit and I am not sure if that is just her frustration or her way of "coping" with all that is going on. She had an emotional breakdown this morning because "I want to wear real clothes". The nurse practitioner helped us through that little breakdown! It is hard for her to understand that they really can not disconnect her PICC lines everyday. We did is last night for the first time since she got it last Tues. I attempted to give her a sponge bath and wash her hair...I think she thought that it could be the norm.

Overall she is doing great. She is such a trooper and has more willpower then anyone I know. She announced last night that she just really wants us all to be together all the time and that she would rather we eat in the room with her and not take turns leaving. She informed us that she would just try really hard to not think about how good it smells. I asked if she was sure as we were fine eating in shifts and she said "no, stay here". I looked over while we were eating (backs to her.... we really are not cruel) and she had all of her animals forming a wall so she could not see and then had her blankie bear over her nose. It was so cute! Today when we brought lunch in it did not even phase her! Can you imagine.....she is amazing!

Had a few really fun surprises today. First - as I was heading up to the playroom this morning to meet Jed and Maddie I ran into a traffic jam.... a whole group here to see Madison! My moms cousins Renne Reimer and Nancy Maillefer and Renee's 6 kids and mother-in-law! Renee has a 16 year old boy, 15 year old boy, 13 year old triplet boys and then one sweet little 9 year old girl! I have not seen Renee in years....they live about an hour away. How sweet to have them come stop by!

A few minutes after they left my cell phone rang and it was Charmaine Balmer from Freeport. Their family was in Cincinnati heading to North Carolina for vacation and wanted to stop by. Mark is our pastor in Freeport. Their youngest Malory was in preschool with Madison! Madison was so excited!!! They played together for a long time... The first person that Madison has played with her age in weeks! A funny thing that happened too.... this morning the Reimers gave her a sweet present with Pet Shop items. A house and some fun animals. We have never had pet shop toys before so she was excited to get them out! Malory shows up and hands Madison a present of PET SHOP animals. It was so cute and the timing was so bizarre!

More mail today from Grandpa& Grandma Smith and Aunt Rachel and Uncle Nik. Thanks!! She loves it!

I need to get her up and moving to the playroom before they close... we will take it easy tonight. Jed will have dinner with a friend that is in town on business and stay at the Marriott with him....I am thinking he did not really love the "extreme" closeness in our bungalow last night! Maddie and I will probably have a date on the roof of D2. Just us and some TPN & Lipid cocktails!

I will keep you posted as we get new info!